Words fail at explaining life with sick kids. They didn't ask for this. We didn't ask for this. I know I rarely talk about S's noncompliance- because it's not life-threatening. It's there. He hasn't taken his nightly Glycosade in weeks (and we are in eye drop hell at the moment). He complains daily about being exhausted and I've just come to reply, "Hmm. Glycosade, perhaps?" He is good about his d...aily meds, for the most part.... night and morning. Just not the extra stuff. One reason I don't give advice when people ask for prayers is because I know that sometimes prayer really is the only thing that can help. We've tried everything. They are not bad kids. They are not any less Christian. They aren't like alcoholics. They are two kids who have only known illness. Being a teenager is hard when you are healthy. Imagine being *sick*.
Joseph has been swallowing pills since he was 2 1/2 - taking meds daily since he was a baby. Sean has been taking meds since he was a baby and started swallowing pills at 3 1/2 and that's why J started at 2 1/2- he wanted to be like his brother and not take meds in applesauce. This has been our life for 18 years. I get tired of it, so I can only imagine that they hate it. Add to it, all the surgeries, procedures, hospitalizations, infusions, doctor visits and infections. It's amazing that S is only taking one extra year to graduate. Because, in between all of that, we also homeschool.
Then there certainly is the aspect of, "God healed Sean a little, but not me." Sean did IGG for 8 years, trialed off and has done well, though his IGG is very low normal, he's only gotten pneumonia once since being off. J trialed off and had hopes that it would be God's plan that he wouldn't need it. It just wasn't God's will. He also wonders why they both have the same diseases and he's more *complicated*. It's human nature.
I know people mean well when they try to *fix* it. I will never, ever, give up on my children. Jesus never gives up on me, and I will never give up on my children. We've never done this before. Every stage of this life with chronic illness is new to us. We cannot change the will of God. We trust that His will is perfect and that there is a reason for all of this. We can only offer it up to Him and pray that they become adults who take care of their health issues if He chooses not to heal them. As always, my first prayer for my children is ALWAYS that they love God above all else. I pray for that before I pray for healing. If they love God first, the rest will fall into place. God's got this even when we don't.
I am thankful for every one of you who prays for us. So thankful. Especially on days that I can barely find the energy to pray.
Joseph has been swallowing pills since he was 2 1/2 - taking meds daily since he was a baby. Sean has been taking meds since he was a baby and started swallowing pills at 3 1/2 and that's why J started at 2 1/2- he wanted to be like his brother and not take meds in applesauce. This has been our life for 18 years. I get tired of it, so I can only imagine that they hate it. Add to it, all the surgeries, procedures, hospitalizations, infusions, doctor visits and infections. It's amazing that S is only taking one extra year to graduate. Because, in between all of that, we also homeschool.
Then there certainly is the aspect of, "God healed Sean a little, but not me." Sean did IGG for 8 years, trialed off and has done well, though his IGG is very low normal, he's only gotten pneumonia once since being off. J trialed off and had hopes that it would be God's plan that he wouldn't need it. It just wasn't God's will. He also wonders why they both have the same diseases and he's more *complicated*. It's human nature.
I know people mean well when they try to *fix* it. I will never, ever, give up on my children. Jesus never gives up on me, and I will never give up on my children. We've never done this before. Every stage of this life with chronic illness is new to us. We cannot change the will of God. We trust that His will is perfect and that there is a reason for all of this. We can only offer it up to Him and pray that they become adults who take care of their health issues if He chooses not to heal them. As always, my first prayer for my children is ALWAYS that they love God above all else. I pray for that before I pray for healing. If they love God first, the rest will fall into place. God's got this even when we don't.
I am thankful for every one of you who prays for us. So thankful. Especially on days that I can barely find the energy to pray.
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